Dysautonomia SUCKS!

If your're looking for something inspirational in this blog, you might want to look at some of my previous blogs. Not in the mood to blow sunshine up (hmmm you get the picture).Well I'm having one of those days. Actually it's been a rough couple of days and I thought I'd like to have a written record of my bad attitude, it will probably come back to bite me in the rear later, but it will be worth the price.

I've been brought up with the mindset that if I didn't have anything nice to say, then don't say anything at all. Well, I've done that for two years, and now I just want to scream, "I'm tired of waking up every morning feeling like crap!". "I want my old life back!"

Nausea, brain fog, chronic fatigue, tachycardia, shortness of breath, insomnia, medications that could easily place you in a scene from "one flew over the cuckoo's nest", and temperature intolerance are all symptoms that can easily be hid behind a great pair of jeans a t-shirt and some make-up. So can frustration, and anger. Just put on a smile and tell the world you're the same as always. Having to tell myself daily that I have nothing to really complain about because "at least I don't have cancer" isn't easy, and the guilt I feel because I'm upset about my illness when there are people out there who are dieing and have a better outlook on their illness than I do. Having a positive attitude can help, but sometimes you just have to say "Life sucks right now!" and deal with the guilt later.

I would just like to wake up one morning not feeling like I'm going to puke and pass out. I want to go to the mountains, go hiking, and play in the snow. I want to go to the mall and shop and not drop. I want to sing my favorite songs all the way through, and sing another, and another, and stand while singing. I want to work in my garden, and paint my living room. I don't want to be sick, and I don't want to ask for help. I know there are some great lessons in all this, but today I don't want to learn them!

Well dysautonomia sucks, thanks for letting me share.

Not very inspired,
Michele

No longer on the River DeNial

For the first time I realize that I have accepted my dysautonomiaas normal. I don't seem to be comparing what I could do in the past, with what I can't do in the now. Being proactive to my dysautonomia symptoms instead of reactive. I'm beginning to have realistic expectations of my days instead of disappointment at all the things I can no longer do. What a relief it is to take my life off the river of denial and step onto the solid ground of reality.

It's funny how the things I thought I could never get use to are a part of who I now am. Some of my normals include:

• Waking up ready to down a large quantity of water before getting out of bed to relieve an already full badder.



• Dealing with nausea every morning, and not getting a precious bundle of joy after 9 months of morning sickness.



• Wearing compression stockings at the young age of 49 instead of the ripe old age of 70.



• Parking in the handicapped parking, and being ready to defend myself when someone questions why someone who doesn't look handicapped is using the spot. My fists are clenched and ready to fight. My fighting techniques would get anyone rolling on the ground in laughter, and they would probably walk away wondering if the state considers the insane handicapped, and that's how I acquired my plates.



• Purple, my favorite color, how many people can say that their hands and feet show off their favorite color every day.



• Always being prepared that bending over to pick up something off the floor, may leave me looking and feeling like a drunken sailor.



• Accepting the fact that during my drunken sailor state, others may be questioning my sobriety.



• On those days when oxygen is in short supply, it's ok that my sentences will usually be incomplete and end with an ahhhhh what's that word? Or what's his name? Or even what's your name?



• Using a pill box with the days of the week stamped on it doesn't make you old.

• When my heart is racing through my chest and I'm short of breath, I just pretend that I just ran the 6K.



• It's ok to be flopping out of the bathtub like a fish out of water ( I can see my gills, oh I mean nostals gasping for air) because of my heat intolerance and gravity issues.



• Wearing a medical id tag can be fashionable with a little web searching.



• Asking for help actually makes a task more fun.



• I believe I know more about the auto immune system than most doctors.

• I won't get arrested for breaking some sort of health law for eating salty snacks and adding a ton of salt to my food.

• Being white because of the lack of sunshine is the "new black" of fashion.

• Icevests may not be a fashion statement, but they do attract hugs.

• Eating 6 meals a day won't cause obesity.

• Some times it's worth the price of a day in bed to do the thing you love most!

Living with dysautonomia has been challenging, but I'm getting use to my new normal. As most of you know I love the serenity prayer, one part has always stumped me "accepting hardship as a pathway to peace". How could hardship lead to peace? Well in my case, it's the accepting of the hardship of dysautonomia instead of fighting it that has made my life more at peace. I still have those days when the symptoms are difficult to carry, but that's when I rely on friends to carry the burden with me.

Always inspired,

Michele

Teaching with P.O.T.S.

Teaching with P.O.T.S. (Postural, Orthostatic, Tachycardia, Syndrom) has been a unique experience as well a a positive one. Working with this group of amazing students has been a blessing, and the curse of having dysautonomia has been a growing and positive experience as well.

Prayer in the Classroom

Teaching has it's challenges, add working without an aide or any parent volunteers can make things a bit harder, but if you combine teaching with having POTS, it can be a double whammy.

One morning, I was feeling dizzy and out of breath from counting to 100 with the students, and they had become very chatty, and a bit rude. I didn't have enough oxygen or strength to get the children's attention, so I sat down and closed my eyes. Being a Christian I also said a short prayer (silent). Immediately the class became silent, I believe an answer to prayer of course, so I thanked God for His answer, and opened my eyes. The students were sitting perfectly and silently, and I gave them a big smile. One of the students asked me "What were you doing doing Mrs. McGough?", not wanting to cross a fuzzy line of school ethics, I asked him, "What do you think I was doing?" He replied, "resting", another student said, "no, I think she was praying". I smiled, confirming the second child's answer. The first child asked, "What were you praying for?" again I replied, "What do you think?" he answered, "that we would be good". I smiled again, thinking God had truly answered prayer that morning. I then had the strength and the attention I needed from my students to teach the next lesson.

My lesson: Prayer does work in my classroom.

The ice vest

One of my students went to the office wearing a very cute headband she had made in class with ears attached to a fan folded strip of paper. The secretary, who knew my class was learning about ears and hearing for our five senses lesson, asked the student what she was learning with her ears today. The students response was "We learned that Mrs. McGough was wearing her ice vest so we couldn't go on our listening walk, so we just sat." The secretary asked, "So you didn't hear anything today?" The student replied, "We heard lots of stuff, we just couldn't walk and listen." This student was obviously more focused on my ice vest then on the lesson, but it did give quite a few of us a good chuckle.

Lesson # 1: The listening activity was actually better without the distraction of walking, I would not have known that if I hadn't been struggling with heat intolerance that day.

Lesson # 2: Wearing an ice vest usually accompanies more hugs than usual, I often have to pry a student away, who is using my vest to cool themselves off.

Little Helpers

It's common for teachers to encourage students to help with different classroom jobs in the classroom. Typical jobs would include line leader, door monitor and librarian. Since my POTS diagnosis, getting up and down can be a bit exhausting, but I usually just pushed through the tasks. One day I asked a student if they would mind turning on the air conditioning for me because I felt a bit dizzy, he responded with a smile and asked me if he could be my "air conditioning guy". Well that day prompted other students requesting to do odd jobs, and the number of jobs has stretched a bit to include;

• 
  
  Tissue monitor, this student insists on getting me a tissue every time I sniffle.


• 
  
  Baby wipe monitor, this students gets me a baby wipe at any sign of messy hands.


• 
  
  Heater monitor, this student turns on and off the heater as needed.


• 
  
  Sanitation monitors, these students are in charge of keeping the floor litter free.


• 
  
  Lost object finder, when ever I misplace an item this student searches for it. Wish I had one of these at home.


• 
  
  Dropped object picker upper, since bending over is a problem, it's great to have someone pick things up for me.

I could go on, but you get the picture. Each of these jobs was student generated, and teacher appreciated. The students are learning about helping others and taking pride in a job well done.

My lesson: It's ok to ask for help, even from a five year old, it makes them feel needed and important.

I realize I'm very fortunate to be able to work and have POTS. Many of my friends with dysautonomia can't, which has given me an appreciation for every day that I can work. I walk into my classroom every day aware that this could be the last year I'm able to work. Working each day as if it could be your last definately changes your attitude. I have never enjoyed working as much as I do this year.

Always inspired, and grateful to work,

Michele

An ode to teacher's gifts

Many off you may think less of me when you have finished this blog, but since it's my blog and you're reading it I might as well give it a go.

I usually use this blog as a way to express my personal frustrations and insights I've experienced since I've been diagnosed with POTS. But as I was clearing away the gifts under my Christmas tree, and reflecting upon those gifts I received from my precious students I began to chuckle at this question in my head.... "What were they thinking?" (the students parents that is).

So here are a few of my favorites.

• 
  Dragon and castle plastic snow globe. I guess I can put that next to my Harry potter wand and my Lord of the Rings sword (I really don't own these, but my parents must think I do).



• Extra large plush bear. This would definately go with my Raggedy Ann and Andy (sorry Von) which again I don't have.



• Pink, purple and magenta super fuzzy scarf. This would look great on a six year old or maybe a life size Barbie, though I believe even she has more fashion sense.



• A 36" ceramic plaque in gold embelished with Cherubs. It must weigh 25 pounds! I'm sure Wayne Newton would have loved this gift. I would probably need to hire a handy man to install it on my wall, Hmmm..... Handy man, might be worth digging it out.



• Purple anything, lotion that instantly causes my lungs to close up, sweaters, blouses, candles, or stationary. This is the only draw back to sharing my favorite color with my students.



• 4" plastic cactus, which will go nicely with the plastic velvet roses I received for Valentines day. These items will do so much for our environment, just think of all the oxygen they produce in their lifetime!



• The little nighty one of my students claimed that "my daddy picked that out just for you Mrs. McGough". I later found out that one came from one of my student teachers.


• At least a dozen platic statues in various shapes and sizes that could easily fill a chotchky cabinet if I chose to do so.

Now I do realize that it's the thought that counts, but until I started this blog, I was at a loss as to what to do with all this stuff that has jam packed my storage shed. The answer came to me as my guilty conscience became concerned at what some of my church friends or even my pastor (hi Pastor Tom) might think after they have read my unappreciative rantings. Then an idea popped into my guilty head, I'll have a garage sale, and the procedes can buy a chicken or a goat for the poor in neady countries. Or maybe in the offering. Feeling better already, though I think that might be an attempt to buy my guilt away, and that won't work. Hmmm I'll have to give it more thought.

Now I have received some wonderful gifts. Such as book store gift cards that enable me to purchase more books I can read to my precious students. I treasure the hand made gifts such as the hand made ornaments I pull out of my ornament box every year. Those ornaments are special to me. I have to be honest though, they don't really go with the silver, gold and white theme on my Christmas tree. Now I may put them up some day if I become one of those people who has a home big enough to have a tree in each room, and is highlighted on the HGTV channel. Now I know many of you may be shaking your head in disgust at my lack of sensitivity in this matter, but to be perfectly honest, my own childrens home made ornaments are not on the tree either!

Well it's time to get back to putting away those special gifts, I may have to get another shed if I don't have that garage sale.

Always inspired,
Michele